School’s back in session. With fall approaching, your author has resumed teaching and attending lectures. Today I had the chance to visit the New-York Historical Society where an exhibit, AIDS in New York: The First Five Years is winding down. The display closes in two days.

A group advocating AIDS research marches down Fifth Avenue in June, 1983. (M. Suriani/AP image) NYHS

The opening scene, by the first room’s entrance, is breathtaking in a way. There’s a huge picture of men, countless, basking in the sun on a Hudson pier. The men looked relaxed, comfortable and healthy – blissfully unaware of what lies ahead. The exhibit takes you through the late 70’s club scene, with just a few pictures of that, and then moves to confusing and odd reports of unusual infections in homosexual men, intravenous drug addicts, hemophiliacs and Haitians. The show moves on into the early 80’s, when science steps in slowly, and most politicians keep away.

What’s clear is that most doctors didn’t know what was going on. The young men weren’t sure either. There were rumors but also credible denials about a disease affecting the community. Gradually, the city’s Department of Health and CDC started tracking the problem. There were protests, and activists, and friends helping friends to die. There was no therapy back then, except to temper some of the infections and treat the once-rare cancers we were seeing with strange frequency.

I had the fortune of walking through the exhibit today among a group of suburban high school students – kids who were born after the invention of anti-retroviral therapy. Their questions – some simple and others intense, and the relatively young guide’s recounting of her experiences during the early AIDS years, made me realize how crucial is this history. It was a terrifying health problem, then.

Yes, the historical society’s exhibit is neat and tidy. I remember, well, caring for young people who died, hopelessly. The gravity of the epidemic isn’t captured. But it’s a worthwhile review, nonetheless – especially for its bits on low-end media, like typed bulletins from the early Gay Men’s Health Crisis and early posters on safe sex. Those frank messages provided the only information some people at risk received about the emerging disease. The display includes a few passages and images having to do with patients helping patients. That was the best part.

Yesterday I took a field trip to meet Regina Holliday, an artist and patient advocate. She fielded questions after a screening of 73 Cents, a short film about why she painted a mural by that name in the days after her husband died with metastatic kidney cancer. He was 39 years old.

At the time of her husband Fred’s diagnosis, both she and her husband held several jobs but he lacked health insurance. In a video, Holliday describes how his diagnosis and care were delayed.

“73 Cents” refers to the price, per page, Holliday needed to pay to get a copy of her husband’s chart when he entered a new medical facility. According to the film, she was told she’d have to wait 21 days to get his records, even though he was acutely ill and dying. Now a widow with two young sons, she pushes for patients’ rights to access to their health records and, more generally, for a patient-centered approach to medical care.

The film-makers’ point: The unreasonable price of the medical records, combined with the delay in receiving them, exemplifies unnecessary harms patients encounter in an outdated, disjointed health care system.

Holliday has several ongoing projects, including the Walking Gallery. In that, she represents health care stories on the backs of people’s jackets. The idea is to take the message of the mural – which is one patient’s story, and necessarily static – and take it further.

This is an unusual entry into a discussion on the limits of patient empowerment.

In late December the Times ran a story, beginning on its front page, about a portrait in the Metropolitan Museum of Art by Diego Velázquez, the 17th Century Spanish painter. The news was that the tall representation of the teenage Prince Philip IV would be back on display in the European paintings galleries after a 16-month cleaning, restoration and re-evaluation of the work. And, in case you weren’t up on your art history news – the painting really is a Velázquez.

label (ikonic's Flickr)

I learned this morning that the museum received the painting in 1913. It was a gift of Benjamin Altman (that would be B. Altman, as in the department store of my childhood…). The 7-foot portrait was considered a true masterpiece for hundreds of years, its authenticity supported by a receipt signed by Velázquez and dated Dec. 4, 1624. According to the Times now, in 1973 experts at the museum formally revised their opinion of the painting; they down-rated it, saying it’s a product of Velázquez’s studio, rather than of the artist himself.

Velazquez' Portrait of Philip IV, at the Metropolitan Museum

Evidently Michael Gallagher, the chief paintings conservator at the Met, recently became concerned about the painting’s “workshop” label based on his experience upon cleaning another, later Velázquez portrait at the Frick. “Its true condition was obfuscated by the decades of varnish and the liberal repainting,” he said of the Met portrait. According to the Times, Philip’s left eye was missing, possibly from flaking or vandalism. Ultimately, x-ray analyses and careful examination of the cleaned portrait convinced Gallagher and his colleagues of the portrait’s legitimacy.

I was in the neighborhood, so I thought I’d check out the work for myself, in light of this new information. I spent a while staring at it, studying the prince’s hand and other features about which I’d recently updated my knowledge. Still, I realized, there was no way in the world I could tell, on my own and even if my life depended on it, if it were a Velázquez, or not a Velázquez.

Sometimes you have to rely on experts. I don’t have a Ph.D. in art history. Or anything approaching sufficient knowledge of Velázquez and his workshop, Prince Philip IV of Spain, x-ray analyses of oil paintings, varnish and resins, 17th Century receipts and signatures, or similar “cases” – like the related portrait that turns out to be in the Prado, and other works by the same painter – to know the difference.

That’s the thing – in medicine, if you have an unusual health condition, like a rare form of T cell lymphoma or an obscure infection, you may find that you depend on a doctor’s expertise. Recommending the right treatment (which might be no treatment) requires knowing and understanding the correct diagnosis. Figuring out what’s the correct diagnosis requires a lot of knowledge, and experience.

detail of hand, in Velazquez' painting

As for patient empowerment, I think what patients with rare or puzzling conditions can do is to make sure they’re comfortable with their physicians, that their doctors know what about what they’re treating and will admit when they’re unsure of a diagnosis or need more expert, specialist advice. The problem, then, is for doctors to admit what they don’t know, which in the end requires that they be well-educated and able to discern unusual cases and outliers, and take the time to notice – and not dismiss – details about their patients’ stories that warrant further examination and thought.